The chronicle of a family thriving in the middle of a nightmare. You'll laugh a lot more than you expect. Promise.

Monday, June 28, 2010

Just like Cher, Madonna, and Sting

I don't even know where to start I'm so tired.

We are just home from Heart Camp (camp Taylor is for children living with heart disease and this was their family camp weekend). It was amazing. It was awesome. It was CAMP!! Ok, it was in a Hilton and we went to Great America one day, but still...we sang songs, we made friends, we played games and walked away with a memory book, email addresses, and some fabulous photographs that are attached to splendid memories.

Here's a recap:

We arrive on Friday afternoon to the Hilton hotel in Santa Clara. As we walk into the hotel lobby we are immediately welcomed by no less than five folk from Camp Taylor. We meet our mentor Sarah, the camp Dr (Double D) and three other staff/ counselors. By the time I finished shaking hands with people Simon has been in no less than three peoples arms and has given out numerous kisses and hugs. It took Jaime and I just a few moments longer to realize that we are in fact 'home' and among our 'people'.

I leave to put our bags in the room. I'm not gone longer than 10 minutes but when I come back Simon has a circle of people surrounding him laughing and all knowing his name as though they've been friends for years. It's like he's back to a camp that he's been going to for years (many more than he's been alive) and it's the first day back and everyone is so glad to see each other after a long year apart. It's amazing.

I can hardly catch my breath and we're off for family photos and a crafts project making our family banner. Crafts are a little beyond Simon but he doesn't waste a minute (practically) running back to the lobby to shmooze some more with his new friends.

Jaime and I take turns following him around (a foretelling of how the rest of weekend would go) and then, once our banner is done, we all head up to the room to get ready for dinner.

As we're coming down in the elevator for dinner, I can tell that we're sharing the car with some fellow 'campers' and introduce myself. A few sentences into the introductions and scars are being shown, diagnoses shared and g-tube/g-tube scars are pointed out. And this kid is 6! Later on in the weekend I had to pull this young man aside and tell him what a "totally cool thing it was to meet him and I could only hope that Simon would grow up to be half as totally awesome" as this young man was.

And this is how the weekend went on.

Simon was one of the youngest kids there and the only one with his particular brand of heart disease but he fit in like a broviac to a central line, like a NG tube to a nostril...like a catheter to a.....you know what I mean.

We all did. We fit in like that. We met other parents and talked barf rags versus barf bags. We talked about being stay at home parents when there was hardly time to be at home given all the different appointments one had to get to. We talked about those first moments of diagnosis and the complete devastation that comes with performing CPR on your own child or having to hand them off to be ventilated wondering if you were ever going to hold them alive again as you did it.

And in each of those moments, with each of those parents, my family grew exponentially as did my heart. I am amazed again at the room there is for a heart to grow (in beautiful and strong ways) and let people in.

Saturday brought more fun in the sun (bless the inventors of the wicking cooling vest) as well headed across the parking lot to the Great America amusement park.

Simon rode on his first carousel, went down his first water slide, and met Snoopy (promptly sticking his fingers up the over-sized pooch's nose).

What was so amazing (besides the call of "if you got a pacemaker..over here!" as we headed through the metal detectors) was the recognition anytime you came across other folks wearing the black Camp Taylor t-shirt. It went so beyond the 'we're at the same camp' small talk and moved right into this soft warm intimacy that comes so beautifully with a shared traumatic/survival experience.

And Simon was once again on the go. Laughing, smiling, hugging like a hippy. He was also talking up a storm. He's on a verbal tear. He'll pick up and repeat words that he hears in conversation but then also whips out new ones that we're not sure where he's heard. Hello, armpit, awful, puppet show, airplane, chick, and the favorite of so many at camp this summer, Bullsh*t. The latter being said so clearly with such crisp enunciation. He's almost got the two sentences "This barfing is awful. It's some bullsh*t!" This went over quite well with the teenage counselors at camp almost all of whom were at one point or another in Simon's barf boat.

That was another thing. Since Simon was one of the youngest campers there AND most of the staff were older teenagers and young adults living with heart conditions (other were siblings and/or friends) it was this incredible gift to see possible futures for my own little man. There were thin kids, thick kids, buff boys, gorgeous girls, jocks, arty, nerdy, make-up wearing, facial hair having, hooking up, going off to college, happy, happy, joyful, generous, mature beyond their years, young men and women.

I could see it. Twelve or so years from now, Simon would be one of those mentors, welcoming new families to camp and telling them his story, showing off his scars, and sharing the love that comes from not just surviving but thriving through this life.

All too soon it was Sunday and we were getting ready to leave. Simon was having a pretty pukey day (more on that in the next post) and had already anointed some poor girl's brand new build-a-bear stuffy, another camper's shirt, and several different area rugs at the Hilton Santa Clara.

(Jaime here)

The way the other kids, both heart campers and their siblings, reached out to Simon was incredible.At one point, Simon was hanging out near two older boys. One (who I think had some cognitive stuff going on) was freaking out about Simon being near him b/c he'd witnessed Simon throw up earlier. I totally understood but was sort of embarrassed and praying that he wasn't going to boot again near this kid. The other boy, Evan, was incredible. He was probably 8 or so and just immediately connected with Simon. He asked me if Simon had a g-tube and when I said yes, told me he'd had one and whipped up his shirt to show me his G-tube scar. He stuck out his hand to Simon and said, "Hi, I'm Evan. What's your name?" Simon, of course, didn't answer, but clearly got the message that he was being welcomed and looked up at Evan with a beaming smile. I warned him that Simon was kind of barfy. He answered with a smile, "oh, I don't care. My brother has nosebleeds all the time and I'm always covered with blood" and then held out his arms to take Simon into his lap. The other kid stared at him almost slack jawed.

Simon barfed on one little girl, Reyna, when he was on her lap and I was mortified. I couldn't quite tell from her reaction if she was totally freaked out or nonplussed as she was debating whether to go change her clothes. I apologized profusely and her older brother (maybe 12 years old) was so sweet about reassuring me that it was really all okay and was so gentle with Simon. Later I went up to their parents and said, "sorry my kid barfed on your kid" and Mom exclaimed, "Oh my gosh, it's become a badge of honor for Reyna! She's walking around proudly saying, Simon threw up on ME!". I had to bust out laughing. Only at heart camp, right?

(Laura)

Jaime and I were feeling the embarrassment of Simon's marking but getting only true 'it's ok we've all been there' smiles and support. It just meant that as we're getting ready to leave, even more emotions got churned up so that by the time we're at the Goodbye/Testimonial gathering, we're already feeling pretty fahklempt.

As we were waiting to get started, another workshop was running late and some of the assistant counselors were leading songs. As they stumbled through a classic, forgetting the words, a loud voice rang out from the back of the room. I was wondering who was singing so loudly, clearly taking the lead where the assistant counselors were stumbling. It was ME!! Without even thinking about it I was falling so easily back into being a 'camp leader' and within moments I was being called up the stage to lead another song as we waited for the rest of the group to come together.

There I was (like I hadn't been in years) taking a hundred people through 'building a rainstorm' and then through several rousing rounds of "Down by the Bay." It felt like heaven to be back at camp like that and touch on the well of song leading skills that rarely gets dipped into these days. That was the 'camp' moment for me.

It was an incredible weekend with a most incredible unexpected ending.

So...we're all standing around the lobby, folks are departing, goodbyes are being said, emails exchanged, etc etc and Jaime and I are standing with Simon figuring out our game plan for leaving. Jaime is holding Simon and I am standing right next to her when all of a sudden we feel two arms come around us and squeeze us together in an all-enveloping hug.

It's "Nana". Nana and Papa are the camp names for the elders of the camp (Father and Step-mother to Kim who's the founder/director). We've shared a little time together over the weekend (Simon and Papa shared kisses earlier in day) but nothing extraordinary so we're wondering what's coming.

With tears in her eyes, Nana begins to tell us how she is LDS (Mormon) and that there are at least 10 other LDS folk at camp that are as well, including the founder. She continued on saying how happy she was that we were here and sharing our family with hers. She wanted us to know in no uncertain terms that she was not a supporter of Prop 8 and that there were many other Californian members of the church that did not support Prop 8 and recognized and celebrated our family. The whole time she was talking to us, holding all three of us tight, Jaime and I are just looking at each other, then her, then back to each other eyes wide open. It wasn't quite shock since all weekend there were these wonderful moments of recognition and familiarity but it certainly was unexpected and seemingly a little out of context.

(She didn't need to do that. She made a point of sharing that with us. Again,...amazing.)

It wasn't until Jaime and I were debriefing a few minutes later that we remembered that not only were we the only gay family there but we certainly weren't the gay family in the corner type either. It was the first time in a long time that I had been the only 'homo' in the room and was both aware and not of the impact that our family might have been making. I had been leading songs in front of the whole camp, Jaime had been networking up a storm from the moment we arrived.

And Simon....well Simon had been doing his Simon thing all weekend long. Hence the title of this post.

Example given: As they are handing out folders for each family at the closing ceremony families are being called up to receive them by last name "The Burton family....the Smith family....the Jameson family," and then I hear it. Alone. Just one word..."Simon". He's like a frikkin' celebrity. He just needs one name to

5 comments:

Once again I am tearing up while reading your post. Starting to think your blog is my way to shed tears I am otherwise too busy crying ;-) Sounds like a wonderfully amazing weekend indeed! Awesomely Simon!!Kathalijn

I'm sitting here at my desk where I should probably, (most certainly), be working, but am instead reading your blog with tears in my eyes.

Thank you for sharing your stories. The love that you and your family share is palpable and while there's no way to "catch the gay" from you, I do hope others can catch the joy and love that you're spreading.

About Us

Team Shimmy was started the day our baby, Simon (aka Shimmy), became suddenly ill (8/1/08) with a rare heart condition called Cardiomyopathy. That day, friends and family rallied around us to form Team Shimmy. This team, which has grown to include new friends and strangers from all corners of the world, has sustained us with love, food, kind words and listening ears.
We spent 4 tumultuous months in the ICU at Children's Hospital Oakland. Simon has been steadily improving since that day. He was fed through a tube in his belly (a Mic-key) until December 2013, was diagnosed on the autism spectrum, receives various types of therapies and is still on meds. Oh, and he's the happiest, most engaging kid we've ever seen. Jaime (Mama) works in public health and Laura (Mommy), a former school social worker, stays home to take care of Simon (and to take him to his MANY appointments). To see a 10-min documentary about our family, go to www.youtube.com/watch?v=uGh8dFp2oqk.
This blog is a chronicle of our experience thriving in the middle of a nightmare. You'll laugh a lot more than you expect. Promise.
Contact us at lafitch@gmail.com or jaimejenett@gmail.com